31 July, 2010

I know these posts are probably boring to everyone but me, especially because I never come to any real conclusion. I just like thinking about language more than I like doing almost anything else. In practice, I generally use person-first language, but that's for various reasons not worth talking about (especially because I talk about those reasons a lot anyway). However, I was thinking a lot and I feel like, at least when I look at it in theory, person-first language is kind of painful for someone like me.

Just kidding, I am going to talk about what I do in practice. Being called "autistic" or calling other people "autistic" makes me uncomfortable and so I don't do it, but that's very specific stuff about the word autistic and how it feeds into cultural connotations about ASD that make me incredibly upset. However, although I guess I don't have much occasion to identify myself as just disabled (and when I do it's to pretentious social justice people, so I throw the term PWD around because they like acronyms) there is this really nice place in my head that goes "I'm a disabled person, I'm a disabled person" and it's seriously just one of the nicest-feeling phrases in the world. I like the word disabled, it looks soft, and it fits me neatly, and I enjoy the part of me that just feels like "a disabled person" and not "autistic" or "a person with autism" which isn't that great either, or "a person with a disability" or "a person living with a disability"--like how far away from me can you get it, is my question? "Amanda is a human being who is currently at this moment in time making her way around the planet with, um, a disability." Oh boy! Poor Amanda!

Poor Amanda indeed. I certainly feel like Poor Amanda at school sometimes because it hits all my energy drains--planning tasks/transitioning/starting tasks, looking normal, and putting enunciation and loudness (two things that are somewhat painful) together with lots of words that are appropriate in style for what's going on. Also recently there have been really good times like taking a class where the professor insults people with your disability, and the TA gives examples of what people with your disability are like (I know this doesn't sound bad but it makes me feel sick), and then in your other class someone writes a story about their sibling with your disability basically acting like their sibling is some sort of tornado instead of a twelve-year-old person. All of this stuff made me spend last term with an ever-expanding belief that I had schizophrenia, anemia, multiple sclerosis, and lots of other illnesses that I would look up on Wikipedia--I had gotten to a point of being extremely exhausted all the time and having such an immense amount of trouble making decisions and tolerating small amounts of stress that it was hard for me to do anything.

***

Sometimes I have a running mental conversation with myself about how to describe autism to people if I have to disclose. A recent one goes: "Autism is like being born with a giant pile of shit on your face, and at first you don't realize it's there, but eventually you do and you start washing it off, but even after you wash it off you can still smell it and other people can smell it too but they don't always know what it is they're smelling but they know it's bad."

***

My current job is the opposite because it avoids all my energy drains. I am working at a summer camp where we have to follow a strict schedule. I am never just drifting in time. All the campers have developmental disabilities and our focus is on relating and engaging with them, not on looking normal. Talking in a complicated-sounding way is not seen as valuable at all.

***

It's funny because what I don't like about the way some professionals and laypeople use the term "autistic children" (or autistic something elses, but mostly children) is that they act like autism is about a preference and a decision to disengage from other people because you aren't interested. Or to be violent or something because you don't care about other people's feelings or are selfish or mean. However, what I'm saying about "person with a disability" is actually a somewhat analogous characterization--because saying that people with autism aren't interested in other people, and that's why they don't look at them, implies that everyone can look at other people if they just work hard enough, and so on and so forth. It places the entire burden of managing autism on the person with autism. You can be a good autistic person--that is, a person with autism, who keeps their autism in a place where no one can see it. Or you can be a bad person, which is to say an autistic person, who is selfish and disruptive because they express their feelings, don't hide stimming, don't force eye contact, and so on.

***

In my creepy disability studies class that I dropped, someone did say something sort of good--they said something about the burden that disabled people get saddled with to educate other people about disability, and the unfairness of it when the disabled person has a disability that makes it impossible for them to fulfill that role.

That resonates. Sometimes I have the spoons to be a person with autism--a person who has autism like I have a backpack or a phone. I can leave my backpack in my room when I go to the mailbox. Some people see me walking around in the winter when I can carry my wallet and keys in my jacket pocket, and they don't know that I'm a person with a backpack. And my greatest problem, I guess, is just that if I say "I have a backpack" people might not believe me, because I don't look like someone who has a backpack.

If I am visibly disabled, or even do things that might not even be read as markers of disability but I know that's what they are, or if I just straight out mention it, I fear becoming disabled/autistic instead of A Person With because the truth is people do perceive you as lesser if your disability can't be contained. I have a feeling that they will become ethically better than me in all situations thanks to PAE, or just that they will always think they're going over my head. But I can't avoid that forever. I can't really be A Person With--A Person Who Has--because having something implies ownership and competence and sometimes those aren't things that I have in great enough supply that I can just treat autism like a possession. Sometimes I drop my thermos of autism and spill it all over myself.

***

In my current environment, the disability has been moved to the front. I'm a disabled person. Instead of a regular person handling something, I'm just a different kind of person. It's funny because I feel that at this job, my disability is an asset. I certainly don't understand everything that all other disabled people feel and experience, but I am pretty familiar with sensory issues, trouble communicating and making decisions, not looking at people, being under- or over-affectionate, and so on. It's not something I have to read about, I can just relate to it and I respect it easily. So right now it's nice to be a disabled person, but when I have to send the disability away from myself it turns into shit.

Before I start I guess I should remind you that I am a human and I don't always think the same thing consistently over long periods of time. For example a long time ago I remember saying that I thought ABA was really awesome. I still stand by what I was trying to say which is that behaviorism is extremely powerful, and in a pure form I think it's wonderful because it shows a person that they can have control of their world. Of course Lovaas was a piece of shit, and lots of people who do ABA have incredibly fucked up goals for their students. The reason I made those posts being so pro-ABA was because I saw some of the comments on FWD/Forward when "They hate you. Yes, you" was in the recommended reading. The comments seemed to be responding to my post as though it was an expose on how ABA is bad. That wasn't what I was trying to say at all and I was frustrated because the actual point I was making was something I thought was important, and was a realization that had made a huge difference to me. People often misunderstand me in real life because of how I pronounce words and because I leave out information, and I see writing as an area where I have time and space to explain myself. It upsets me when I work really hard on something and people still have a different reaction from what I hoped for. I mean no offense to the commenters in question, they're under no obligation to get out of things what I'm putting in, but I am just sensitive about these things and I felt upset.

The thing is, ABA does tend to be associated with abusive and ableist goals even though not everyone who does ABA has those goals. So in retrospect I feel weird about speaking about it as positively I did. I love behaviorism but I don't love ABA and most of its practitioners are the kind of people I hate most.

When I was a kid I remember encountering fantasy books that took place in societies where people with blond hair and pale skin were considered to be unattractive. Early on, before the character development, the blond main character would be beating him- or herself up for being so "ugly" and "freakish." I enjoyed those books at the time, but in retrospect it strikes me as cheating because the reader gets to enjoy the angst of having the main character think that they're ugly, but doesn't actually have to identify with a character who has dark skin or dark hair, the traits that are considered undesirable in real life.

I just finished reading Tangerine by Edward Bloor, a young adult book that does the same thing with disability. The main character, Paul, is said to be "legally blind" but the implication is that this either hasn't been true since he was a kid, or that it doesn't really affect him that much. People react negatively to Paul's label of disability, and his glasses (which are apparently unusual-looking), but there are no instances in the whole book of Paul not being able to do something, or needing help, because of his vision. He describes things he sees which are quite far away (for example, birds flying and fields that he sees out the car window). His disability seems to exist in name only.

I've had this book since I was 14, because I bought it and never read it. I finally decided to take it to camp so it would stop crowding up my bookcase, and when I opened it to a random page I was surprised to see the word "IEP." It turns out that Paul's IEP is an important plot point--which is interesting, right? When I had an IEP I didn't know I had one, so I don't know whether IEPs are portrayed accurately in the book. They are portrayed as something that sucks.

The implication is that Paul has never had an IEP when he moves to Florida at the beginning of the book. (He's about thirteen or fourteen years old and has been visually impaired since he was five.) His mom mentions to his new principal that Paul is legally blind, and is told to fill out an IEP. Then Paul is given a guide at school, who he blows off saying "I can see fine," and is prevented from playing soccer because it would be bad for the insurance to have a legally blind kid on the team. Paul loves soccer and is really good at it, so he flips out and takes extreme action so that he can transfer to a different school and intentionally keep them from realizing he's disabled. The rest of the plot comes out of Paul's experiences playing soccer at at his new school where most of the students are poor and nonwhite (Paul is rich and white).

Throughout the book, the implication that Paul is impaired in any way is portrayed as laughable. In the narration, Paul keeps commenting that he hopes no authority figures from his old school see him and exclaim, "That kid's handicapped! He needs an IEP!" (Handicapped is the word the soccer coach used when explaining Paul couldn't be on the team; Paul never calls himself handicapped, disabled, blind, etc., but instead refers to "my glasses" as the thing that sets him apart.)

Paul's label of disability is used against him by his family as well as the school. It is obvious from the beginning of the book that Paul's brother has problems with violence and crime, but that their parents play favorites and ignore those problems. When Paul points out things that would reveal what's going on with his brother, his parents remind him that he can't see very well and probably misunderstood. I feel like this would be cool if Paul actually was impaired in any real way--I just read The Girl With the Dragon Tattoo, and I think Larssen does a fantastic job portraying Lisbeth as someone who is unfairly labeled and discriminated against due to her disability, without implying that her disability isn't real. But in Tangerine, disability is just an idea that you use to hurt someone, there's no real disability.

(I also feel like when you spend a lot of time saying "but I'm not really disabled! That's hilarious that you would say I'm disabled!" you start feeding the specter of those Really Disabled People who exist somewhere, who it would be so terrible/outlandish to be associated with.)

There are a few instances in the book that seem to imply a more positive identification with disability--or some kind of identification, anyway. Paul thinks of himself as a circus freak because his brother tells people that Paul became blind from looking at an eclipse straight on. (No prizes for guessing how Paul actually became blind.) Paul says that he doesn't mind being a racial minority at his new school because "my glasses" make him feel like a minority anyway--which is obviously problematic but does imply that disabled people are a minority group.

The most striking instance is when one of Paul's new friends is talking about his (the friend's) brother, Luis. Paul's friend talks about the knee injury Luis got as a kid, his ambitions, and the fact that he played soccer in middle and high school. When Paul asks what position Luis played, the friend replies, "He played goalie [Paul's favorite position], because he was handicapped."

Paul has a strong reaction and imagines that his friend might be making fun of him by using the word "handicapped," but realizes that he isn't and marvels that his friend neutrally used the word. Luis is a heroic character whom Paul admires and learns from, and I don't know exactly why Bloor decided to make him disabled and a goalie. The commonality between Luis and Paul is never discussed again.

I like reading books written for kids (although it was embarrassing when my 14-year-old camper said, "Oh yeah Tangerine, I just read that book for school") and I like the style of this book and think it has an interesting plot. But I'm sort of frustrated that Bloor brought in things like Paul's IEP and his parents undermining him because of his disability label, without making Paul actually be impaired. I feel like it could be a book that would humanize a disabled character and show how he is discriminated against, without being an "issue book" about ableism. But Bloor just makes it a book about a non-disabled kid who's inexplicably treated like he's disabled.

25 July, 2010

Some counselors throw around the term high-functioning like it's going out of style. It sort of makes me want to throw up. Admittedly if you search this blog you will find instances of me using the term, which I'm not proud of having done, but at least I was using it to refer to differences that actually matter. Now I say "severely disabled" and stuff like that, which is a less fuzzy way of expressing what I mean.

For example, last session I had campers who didn't need help going to the bathroom or brushing their teeth, and now I have campers who do. These differences affect a person's experience in many ways. But this isn't what certain counselors are talking about at all--that nebulous quality of "functioning." The way I know this is that they never say "high-functioning" about campers who have Down Syndrome, or have no eyes, or scream when they get excited--even though some campers with those qualities are very "functioning," that is independent. "High-functioning" means looking normal.

At first I was really refreshed by how little counselors seemed to talk about passing. (Not that they know they're talking about passing--more on that later, since it's really the part that bothers me the most.) First session I had a camper named Joan (names of people I don't like have been changed) who was in the Uncanny Valley--which is to say that if I met her on the street, I probably wouldn't know that she had ID, but she was obviously different from the standard person--she walked differently, she made different facial expressions, and she seemed younger than she was.

I had trouble with Joan because all her UV attributes made her come off as a particular kind of non-disabled girl who really triggers me. I felt weird because other counselors just talked about Joan the way they talked about other campers (what she was like, what she did, whether they liked her or were annoyed by her) but I was also impressed that no one was interested in mentioning that Joan didn't look stereotypically disabled. I wondered if maybe I was the only person maladjusted to notice such things.

But soon other counselors noticed, because passing was a huge issue for campers like Joan and her friend Rachel (also someone I don't like). Rachel became obsessed with the idea that she could be mistaken for a staff person and talked about it constantly. She, Joan, and some other passing campers would always try to do our jobs for us, and would also talk in a babyish way to campers with more severe disabilities.

This was frustrating to many counselors because it's annoying to have someone trying to do your job for you, and also because we didn't like seeing campers we liked being treated in a disrespectful way by Rachel and Joan. But I feel that other counselors didn't really know how to process what was going on or explain it to themselves because they lacked the experience of being disabled and having passing be incredibly important to you. They would sit around talking about how "high-functioning" Rachel and Joan were and how they were treating people who were less "high-functioning." Which isn't what it was about at all. (Note: some people know now, but when this conversation took place none of the counselors knew that I am disabled.)

Counselors: Joan talks to Dan like he's a dog instead of a person! And he's much older than she is! And the way she talks to David is so annoying. I loved this one time when she was talking to Jane and babytalking to her, and Jane just turned her body away from Joan. It was so great. These campers who are high-functioning...I mean, it's good they're high-functioning but they just...

Me: I don't even know what that means.

Counselor: High-functioning? That means--

Me: No, I mean I know what it means, but David is such a nice person and enjoys everything so much, I'd rather have David than Rachel or Joan.

Other counselor: Well "high-functioning" doesn't have anything to do with how nice someone is, it just means how independent they are.

Yeah, keep telling yourself that. Then why aren't any visibly disabled independent people referred to as "high-functioning?" And why don't people like that ever try to be staff? Because it's about passing! Trying to be staff is about trying to say you're more competent than people who look disabled. If you look disabled you don't get tangled up in that shit, you have a whole different set of problems (such as being treated like a baby by the people who do).

About a minute later, a counselor said, "You know, the thing is...I would rather have David. Because Rachel and Joan are so high-functioning, but...when people are high-functioning, they let it get to their head."

Baaaarf. That statement is a really horrible thing to say because it implies that people with ID should know that they're inferior to "us," or something like that, and Rachel and Joan don't know. But I generally respect the person who said it. And I know that she likes and respects David and many other campers. So I'd like to think that she didn't really mean what she said and was just trying to make sense of what was going on.

Unfortunately I don't get to forget that, because in sessions two and three (Rachel and Joan were here first session) there have been many more instances of passing campers being shitty to campers who don't pass. And now the counselors are really primed for it and if I go to sit in the staff cabin I get to hear a bunch of people going, "You know Sam is so high-functioning, I wouldn't even know he had a disability" and on and on and on. I end up just getting up and leaving the room because I don't know how to say, you guys have no idea what this is because you're not disabled, you have no idea what you're dealing with and you are mischaracterizing everything.

Second session, when my favorite camper's brother died and he had to go home, my co-counselor told the camp director: "We should tell the other guys in the cabin, it's a very high-functioning cabin, they're high-functioning people, they'll understand." OMG STFU! You just learned that word and you don't even know what it means. We had nice, sensitive people in our cabin. They were compassionate. Yes they also happened to be able to talk and dress themselves, but that's not why we told them. I don't give a fuck if people can dress themselves, I have to say, it's so far down on my list it's not even visible.

20 July, 2010

today I was talking to two campers Mary and Roland when we were on the swings, and they told me that they're in Green Mountain Self-Advocates and they go to SABE conferences. Roland said he lived in an institution when he was a kid. Mary said, "I didn't get along with my parents and they tried to send me away to a special school, but I proved everybody wrong." She lives on her own and has a job working with little kids and gives presentations about independent living.

so cool. this guy had a seizure and I didn't even notice because I was talking to Mary and Roland. Then I felt bad but the other counselors said that it's okay and when there's an emergency all the counselors shouldn't run over there because it creates drama and someone having a seizure doesn't need five different people trying to help them at once, etc. I just feel like I'm mildly shitty at this job because I'm good with people one-on-one and in very small groups, but I have trouble seeing the big picture and watching a whole group of people at once.

17 July, 2010

On the last night of this session, I was walking back from the last activity with my cabin, which consisted of me, another counselor, and three campers. I was walking behind the others with one camper, and when we got into the cabin my co-counselor was telling another camper, who is 14 and has ASD, "Okay, I'll leave you alone, but if you want to talk to me, I'm here." The camper was lying on his bed with his face against the pillow. Apparently he had stopped talking altogether on the walk back, and had refused to answer questions about what was wrong.

Eventually he got up and went to the bathroom to get ready for bed. I went into the bathroom and said, "Hi Edward."

"Hey," he said from a nearby stall.

"How's it going?"

"Okay."

"Are you mad at us?"

"...Maybe."

"Do you want to tell me why you're mad at us?"

I stood around and messed with my hair in the mirror for about three minutes. Finally he said, "The answer to your question is no."

"Well, if you don't tell us why, we might just keep doing the thing you're mad at us for. If you tell us what it is, we can stop doing it so you won't be mad anymore."

"It's more like I'm mad at my mom and dad for sending me to this camp."

"What's wrong with camp? Is it boring?"

"Why wouldn't it be?"

"Well, I feel like we try to work hard and make things fun for you guys. I have fun. What don't you like about camp?"

"I'll tell you when we get back to the cabin."

"But there are other people in the cabin. There's no one here."

"I'll tell you in the cabin."

I left the bathroom and went back to the cabin. While I was talking to our other campers I wondered what the camper in the bathroom would say about why he didn't like camp. To be honest I had sort of wondered what he thought about being at this camp. He is a passing person, and he was the only camper this session who didn't have an intellectual disability, as well as the youngest camper and one of the few who was under eighteen. As far as I know, he had never been to a disability camp before; he mostly attends Christian camps. I had wondered if he knew that this was a disability camp before he got here.

I didn't know if he had spent much time around visibly disabled people, or disabled adults. I do feel incredibly positive about the fact that this is a camp for DD people of all ages and ability levels, because I think a lot of DD kids don't ever see DD adults in their daily lives. A lot of the time Edward seemed to be following the lead of counselors who would say positive things about older campers ("there goes Bruce, he's so awesome," and so on). But we had just spent a lot of time with older campers and I was wondering if Edward had suddenly become upset about being at "this kind of camp."

I figured I was more equipped to discuss this stuff than any other counselor, since I'm actually disabled, so I headed back to the bathroom and asked him again what he didn't like about camp.

He answered me at once, but very slowly: "Well, the thing is...sometimes I don't like to admit what I actually am thinking...So when I said that I don't like this camp, I actually meant that I do like this camp."

"You're mad because you feel sad about leaving tomorrow?"

"Yeah."

Never mind, apparently he enjoys being at "this kind of camp" very much. The next day he kept saying he didn't know if he was going to come back.

"How come?"

"Well, I don't know if my parents are going to sign me up for next year."

"Why not?"

"Because maybe they won't be sure about whether I liked it here or not."

"Well, you could tell them you like it here, you know."

"Yeah."

(By the time he got in his sister's car to go home, he informed us that he was coming back next year.)

PICTURE NOTE: as a lot of us probably know, Photobucket has recently stopped allowing people to hotlink images. For the first few years I was using this blog, I used Photobucket to host most of the images, so now they will not be visible! Until Photobucket goes under, as I imagine it will, you can at least see the images by opening them in a new tab.